Hi
This is very new to me so please bare with me.
I have been having ongoing tests now for 14 months.
Had every stomach test available and all that he shown up is ibs.
Just been to see a rheumatologist and she suspects I could have fibromyalgia as well as ankylosig spondylitis. My bloods have been constantly showing up as having inflammation. As of yet I still have no answers. Becoming depressed is an understatement. Sick and tired of feeling sick and tired. Hell yeah.
Have no b12 either so have to have injections.
Just wondering if anyone else has similar symptoms??
Sick of being in constant pain. 😢
Hi steff I have been sick for over a year now with my stomach was in constant pain all the time an also have recently become depressed an emotional all the time I recently found out I have interstillias cystis syndrome.. Also got fibromyalgia it as took many of tests an scans to get where I am now an so tiring an upsetting I have had doctors tell me many times I am a mystery.. This group is fab for information an ranting they are a lovey bunch I only recently joined an have had loads of information.. Xx
Thanks for your reply Kirsty.
It's just so frustrating. To be honest my doctor isn't very helpful at all and I'm going to be asking to change this week. I've had enough of him looking at me like I'm a compulsive liar every time I go to see him.
Sorry to rant but I feel like I have hit a brick wall.
I just want my life back.
Also is waiting 6 months for a follow up to see a rheumatologist normal?
Xx
I totally understand where your coming from steff my doctors are a total waste of space mine won't even give me pain relief. I am sick of the Same look all the time I have been told by my urology nurses to change my gp.. I wish I had my old life back I am 36 an at this present moment I feel about 90 my whole body is aching it's untrue. Don't worry about ranting as we are all going thro the same thing I am happy to find this page as it gives me a lot of support an information what doctors or hospitals don't.. We just have to think positive as stress is are worse nightmare xx
Yeah that sounds like me. Lol
28 but ache and moan more than me 85 year old nan.
The doctor has just completely treated me like a guinea pig. (His words)
I'm still none the wiser. I have lost two fantastic jobs and most of my dignity because of it all.
I don't know anyone else in the same boat and because on the outside I look fine people think I'm a liar. I've been called this on many occasion.
I stress myself out over it and yeah it does make it a million times worse.
I've got a very active 9 year old and I feel like I'm ruining her childhood because of it all.
The doctors don't think about the consequences when they give you appointments for over 6 months. That will take me up to the two year mark.
I just want to know what's wrong with me so I can hopefully get some sort of life back.
They keep giving me all different medication and I'm terrified of taking them.
He's given me amitriptyline now.
Does this help??
I'm frightened of the side effects but if they'll help I'm willing to try them.
Xx
I can totally relate to you I have a 10 yr old son I have never felt so bad cos I can't do anything with him we use to play football together all the time an all other fun activities an now all he sees his mum crying or sleeping I feel awful.. I find doctors are no help what so ever and have no compassion towards you or your feelings... I am just thankful my husband is so supportive an understanding he is a credit to me I really would be lost without him.. Am not sur about the medication as my doctors will not give me any think apart from co dryad mol which army any use to me as they don't help with the pain at all few ppl have suggested acupuncture to me which I am hoping to try also heat rubs and wheat bags an hot water bottles which I do find works around my shoulder area also my aunty takes
Gabapentin which she says is marvellous if u get the right dose but am not sure.. I am the same as u with medication don't like side effects an worry about what they can do. There was a time I wudnt take a paracetamol for headache now I feel like I live on tablets it's so horrible to be like this an depend on medication. An I understand with the job I lost my job due to this as I physically cud the keep up with it xx
Yeah I'm the same with the pills. I'm popping them like smarties. If someone shook me I'm sure I would rattle.
It's such a relief to talk to someone who understands.
My other half is fantastic but he doesn't get it.
When I say I'm in agony he's like " but you look fine"
This is the whole problem. People don't understand something they can't see.
I think I'm going to ring the hospital again tomorrow also.
I've had scans/x rays that they sent me for and still don't have a clue what the results were. You would think they would have the decency to keep you updated.
I'm even contemplating moving to see if the hospitals somewhere else could sort this quicker. Living in London is horrible at the best of times but the hospitals are just over run.
That's a completely different rant tho. Lol
I can understand what your saying I have been to 4 differs hospitals in Liverpool an get the same story all the time your gonna be in pain like this for the rest of your life u will have to deal with it !! How the hell can they say that an think that's ok.. My husband is very understanding with it cos he knows am never like this an he reads up on a lot of things which is helpful for him he knows more then me sometimes an he sets my diet out for the week an makes sure am always taking medication. He also comes to hospital app with me now cos I dnt always remember things and always get flustered cos I can never get my point across.. I think you should ring them an totally agree they should have the decency to keep us updated its common courtesy.. Ye I know how you feel when ppl look at you an think sod all wrong with Ye you look fine if only they experienced the pain we go thro.. I have also had a problem with my weight gain I was always 9stone an plummeted to 12 stone nw which isn't helping my self esteem drives me mad all this am so glad to be able to talk about to ppl who understand xx
Hello Steff&Kirsty. I too am having trouble in getting my doctor to even diagnose Fibro~he suspects it!!! He won't send me to see a rhemotologist and has recommended Tai Chi. I've stopped going to see him,but I am in severe pain. I met a neighbour on Saturday and we had a brief chat when I cqame to walk away I couldn't move because of the pain in back and legs. I had to stand and pretend I was looking at a crack in the pavement~good job I was only a few steps from the house.I had to lie down when I got in. I'm really interested in the experiences of the people on this site and can identify with a lot of them. One thing I have noticed is that some of you seem to be suffering from bladder problems. I have had bladder/kidney problems most of my life. The last time I saw the urologist,he remarked on the way I was standing,sitting and walking. I said I thought it was because I had a kidney infwction,he disagreed and said.....come back and see me in 6 months.That magic interval between appointments. I'm wondering,after reading these posts if kidney and bladder problems are connected to Fibro. It would answer some of my questions. Just a thought. Lets keep on knocing on doors until we are listened to. TTFN Dot
Morning dot I have found over the last year how useless my doctors are. Yes I to suffer with the pains in my legs which is awful. And to your question yes it is connected with bladder problems that was how mine was detected thankfully I have i interstitial cystitis painful bladder syndrome I get weekly injections of hycast to try an ease the pain. I also have reoccurring water infections so am on long term antibiotics for it hugs xx
Kirsty,Thank you,thank you,thank you. This has been like a lightbulb moment! I have an appt. with Uro in the next few weeks~and when he commented on my posture,last time I wonder why he didn't connect the two conditions. I was taken off long term antibiotics(Trimethroprim) after 5 years by my GP. I hope to go to this appt with many questions~mainly from what I've learned from this site. Uro may even refer me to a rheumatologist and then I could have a definite diagnosis. Kirst,if no one else thanks you to~day,you have my thanks. Sorry Steff I'm replying to Kirsty trough your post!!! Dotx
I had many of tests and scans it was only when I had the camera did they detect I had it it was a long and painful year.. It was my uroglist nurse who has helped me the most she as been so helpful it was her who got my rheumatologist app as I see my own doctors are useless.. I am so glad I have helped you I really hope you get some answers when you go xx
No worries dot.
This page has already helped me so much. It's so nice to know your not alone ay.
You brought up about bladder problems?
Is this common with fibro because a few weeks ago after getting out the swimming pool on holiday I couldn't control my bladder. Didn't even realise it was happening. The horror.
As I said to Kirsty I have lost most of my dignity already. I dread to think what's going to happen next.
Should I be mentioning this to my doctor?
It's so embarrassing
😓
I would steff if only as u say for your dignity. I have similar problems with my bladder but mine is sudden erge to go the toilet an needing to rush they have said its common with my prolapse and interstitial cystitis xx
It's only ever happened that once but I wouldn't like a repeat performance. Thank god for changing rooms lol
once is enough in it. Thank god for changing rooms ha ha
If it wasn't for that changing room I think I would have drowned myself in the pool lol
Ha ha I would of done the same ha ha x
I feel like such a moany old cow but the last 3 days have been awful.
I had a few drinks Friday night and it has wrecked me.
From head to toe I just ache. Maybe time to stop going out.
Where does it end tho.
I'll be a hermit before I know it.